I have Sjogrens and also Lupus. I've been having a terrible with my tongue burning. Through blood work, they found I was low on B12. I've had 7 B12 injections and my mouth is much better. Just every once in awhile, usually at night my tongue will burn, but most of the time it is normal.
I'm New on the Board & very pleased to have found so many whom relate to the world of Ouwie, Ouwie, ouch.... Being mindful, this is not what or where we'd like to be...
Back to the Burning Tongue:
I totally relate and I also evalute what I'm going to eat or drink before I endulge. Asking, is it worth the burn ? or am I gonna have to ask for a tongue extinguisher.
There has been visual changes to my tongue from before the ultra sensitive to during and now. The now, is still quite sensitive and I request when cooking that the fam does their own upgrade to HOT in a different pan and plate...
Respecting, could it be the Medications, Air Pollution, Green House Gasses, Global Warming ~ ~ Whhhhhhaaat ??
O.K. ~ ~ I think, I have the answer: Pick me !, Pick me ! ~
Everything mentioned above with a side of Sjogrens...
Hopeful this finds you and yours doing the best each moment as this chronic issue has really changed my receipe of simi-normal to
I have gotten used to having to be careful about what I eat and drink. It's funny how some things (like wine) never seemed like something that would affect my tongue. It's probably because it's somewhat acidic. The upside of all this is that I have lost 30 lbs.
Okay, this is first time doing this, hope I do it correctly! I've had a burning tongue/lips x2 years, not much fun..it makes me nuts. No one has ever really come to a definitive diagnosis but I may be getting there(after to many specialilst!) finally. The neurologist I see now thinks it's caused by a sensory neuropathy, and that possibly from Sjogrens. I have llidocaine 2% visciuos solution, it's a mouth rinse, to use. Think novacaine that calms the nerves in your tongue. The relief is very temporary, but feels good while it lasts! Also have other neurological "issuses" and take 2700mg mg neurontin daily. That however does not help the tongue. My favorite friend is ice, yougurt and ice cream...keep your tongue cold !
So right now I'm in the process of testing to piece my numerous problems together and HOPEFULLY find and treat . I have great faith in my new physician "team" I may be seeing the light at the end of the tunnel.
Hi ~ Babs E Boo...
I'm interested in what your sharing on the Lidoderm Solution. I do use Lidoderm patches for my lower Lumbar region + Saccarrilliac area. I get good relief with those..
I'm War-ing with myself to see a Neuro Doc.
I'm War-ing with myself to see my Rhummy Doc.
I'm War-ing with myself to see an Opthamologist.
** I guess Warring with my body is the thing for me to do...?
Then I get to the point of no return I get frustrated and angry and cry ~ and then I go... I really do try and work hard moment 2 moment with what I go through...
I'm just so tired of filling out forms...!!
I'm just so tired of having to look a Doc in the face and they end up being clueless...
I'm just so tired of having to fill a perscrip.
I'm just so tired of Doc appts.
I'm just so tired of being a guinne pig..
MMMMMMMmmm I think maybe, I'm Tired of War-ing...
O.K. ~ I'm going to BED !!!!
Last edited by Drain Bamaged; 04-03-2009 at 11:37 AM.
I haven't gotten the diagnosis yet. Just now thinking it may be Sjorgren's. I can eat fine all day then when I eat supper, even when it is not spicy my tongue burns soooooo bad I can hardly finish eating. This doesn't happen every day, but when it does it's bad.
I am really wanting to talk to my doc and see if we should go further on testing.....please tell me what you think!
Definately talk with your doctor about testing you for a small(sensory) nerve fiber neuropathy. The neuro I see said the tongue burning was part of my sensory neuropathy, unfortunately we haven't found a med that works. The lidocaine solution as I said before is a 45 minute relief, Neurontin 2700mg has helped the motor nerve issues but not the sensory ones. The dr. ordered another med, however it needs preapproval from insurance. Will update this if it gets approved! The mouthwash for thrush did not work for me, the lidocaine is a numbing rx, the thrush rx is antifungal but it's worth a try if it worked for others ! Good luck and suck on ice cubes